By Tomy-Richard Leboeuf McGregor
Living with Cystic Fibrosis
People living with rare diseases have very specific preoccupations. These preoccupations are seldom the subject of political debate concerning healthcare policies. The current election campaign is no exception.
Cystic Fibrosis is the most common rare disease in Quebec with approximately 1500 living with the disease. In the last few years, technological advances in medical science have pushed back the life expectancy of those people. Two thirds of them now are over 18 years of age.
Since 1985, Living with Cystic Fibrosis, the organisation I direct, helps to protect and advance the rights of those who live with this disease. Though the living conditions of our members in Quebec could be the envy of those living abroad, many of our preoccupations which are shared by many other Quebecers must be addressed by those who will form our next government.
We want to use this election to attract the attention of the different political parties to 3 major issues so that they may take position on these aspects of our lives. These issues are organ donations, access to medication and access to in vitro fertilization.
Statistically speaking, you are more likely to receive an organ transplant than to become a donor. In the last few years, the subject has become less taboo and has brought up interesting and vivid discussions. Did you know that right now, even if you signed for an organ donation, any close relative could put an end to the process at any time? We must find a way to affirm consent or refusal to organ donation in a free and informed manner that cannot be reversed by a loved-one when the moment comes to harvest the organs. Many other details must be settled, but before we can move to those, we must hold a parliamentary commission on the subject in the same non-partisan spirit that lead Quebec to adopt the law regarding end of life care (mourir dans la dignité).
Let’s now talk about access to innovative medication. Many of those are used to treat orphan diseases like Cystic Fibrosis. Most have prohibitive costs and are not on the list of treatments reimbursed by public medicare. Treatments on the list are automatically covered by public and private medicare. However, Quebec has a unique regime in Canada: the patient d’exception. This program allows coverage of medication by public medicare even if these treatments are not on the list. There are strict conditions to this exception. Sadly, private insurance is not forced to cover medication that could be covered by this program. Conditions must of course be linked to the reimbursement of medicine covered by this program as they can cost hundreds of thousands of dollars. An automatic coverage of all these treatments would put our public healthcare system in peril even if it is one of the most generous in North America already. Our collective duty is to ensure the future of our healthcare system while also making sure patients in need have access to it. We, at living with Cystic Fibrosis, wish to make propose solutions to make our healthcare system better while making sure patients can benefit from scientific advances.
First of all, the Quebec government must submit private insurance companies to the patient d’exception rules. All patient applications should be brought towards the RAMQ even if they are covered by private insurance. The RAMQ could analyse the applications and, if accepted, the private insurance company would have to cover the treatment.
Some criteria of the patient d’exception program must be made less rigid. For financial reasons, few pharmaceutical companies develop treatments for CF. Thus, few revolutionary treatments are offered for us. The criterion of the program stating that the treatment must be a last resort treatment should not apply to CF patients. It does not reflect the scientific advances in CF research. As things are, many patients cannot have access to promising treatments until their condition degrades and puts their life in danger. The Quebec government could ensure a safe future for patients living with rare diseases by creating a special fund dedicated to the reimbursement of this kind of treatment.
The patient d’exception program must be changed for the better. Simply modifying the evaluation grid for having access to the program is not enough. We must stop fighting with petitions and media battles every time a new treatment comes on the market. An individual approach will hit a wall, and a general approach is necessary.
In 2015, a disastrous decision took the wind out of our community. Without any consideration for Quebec citizens, the current government put an end to free in vitro fertilization, pretexting abuse by a few users of this technique. Whilst a quarter of men and almost all men living with CF need to use this method to have a child, it’s important to note that nearly 15% of couples in Quebec have fertility issues.
We believe our healthcare system must finance in vitro fertilization for those who have an involuntary inability to conceive a child. The costs of this technique are prohibitive, around 10 000$, and have no guarantee of success. This hefty bill puts an end to the dreams of many Quebecers to found a family.
We have the incredible luck of living in a country that has an advanced healthcare system; to be born in a country that puts at the heart of its priorities the social well being and the health of its population. This should not stop us from denouncing some situations that affect the poorest of our society whose health is faltering. We believe that our approach is positive and that our demands will strengthen our public health system. Commitments that address more global issues, such as wait times in the Emergency, need to be discussed. However, we should not forget to talk about those who will need important care throughout their lives and who are often speechless.